I want to go home…

I want to go home

Living with dementia and the desire to ‘go home.’

Just like you and I, people with dementia enjoy the time of others and like to be listened to. They need to feel understood, and they want to feel accepted. Home can be thought of as our safe-haven, a place of conversation, acknowledgment, and love.

If we think about what home means to us, it’s the smell of coffee when we enter the kitchen or baked cookies from the oven. It’s the hung curtains made from the fabric we painstakingly chose, the fresh linen on our beds, the cat curled up in the corner of the room, a placed piece of pottery on the dresser, or the neatly filled pots that edge a perfectly mowed lawn.  These things, and more, define home. Home is individual to us, and it’s a place of warmth, a place of safety that we share with our loved ones, and a place where memories are made.

The move from ‘home’ to a care home is understandably unsettling for all involved, and It’s not uncommon for residents of care homes to say that they ‘want to go home,’ but for a person with dementia, the term ‘home’ may describe something more than the place that they used to live. Often, when a person with dementia asks to go home, they can be referring to a sense of home, rather than home itself. Home could be somewhere they feel relaxed and happy, possibly the place that they used to live, but perhaps too, an undefinable place that exists only in their hearts. What a person with dementia feels is not always easily translated into words that we, their carers and loved ones, will easily understand.

It’s not uncommon to hear ‘ I want to go home’, ‘please take me home’, and ‘why are you doing this?’ These words are difficult to hear and are often followed with words of frustration that can include ‘I want my life back as I knew it’, ‘I want me back as I was’, ‘I want everything like it was’, or ‘I want all the pieces back in place.’ These are expected emotions of a person with dementia, but over time and as they settle into their new environment, feelings of confusion and anxiety often calm.

A person with dementia has a disease of the brain. Like you and I, they see, and they remember, but how they piece old memories, thoughts, and new learns together in their mind can often get muddled. They might see you, like you, or not like you based on the way that you behave, irrespective of who you are and what your relationship is to them.

A visiting husband, for example, might be perceived as ‘that nice man who comes to church,’ or the person with dementia might think that their husband is twenty-years-old, that they too are twenty-years-old, and that together they currently have a two-year-old child. As the disease progresses, those with dementia can want to be young again, believing that they are, and confusing the past with the present. They can want to go back to the house in which they were raised or crave the presence of the people who raised them.

Here, at Leaf Dementia Villages, if a resident with dementia is particularly distressed, we must consider whether they might be tired, hungry, thirsty or unwell, or perhaps overwhelmed with feelings of unhappiness or loneliness. The team at Leaf Dementia Villages provide regular reassurance to our residents. We encourage exercise and exposure to natural daylight during the day—which promotes good sleep at night—and an individual’s medication is regularly reviewed.

We help meet the changing needs of a person with dementia by providing routine to visits and mealtimes, and we place emphasis on the importance of recreating familiar surroundings such as the layout of their bedroom, the preparing of food together in our kitchen and sitting down at our kitchen table with others for cups of tea and dinner.

There is no denying that dementia can, over time, rob you of the person that you knew, but experience teaches us that by avoiding confrontation, providing reassurance of their safety, showing empathy, and sometimes diverting conversations, we can help our loved ones to feel safe, valued and understood.

It’s time for change in the way we care for people with Dementia in the UK in Care Homes and Nursing Homes. Fish and Chip Friday

1 in every 14 of the population aged 65 years and over has dementia in the UK.  There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025

Yet, we are lagging behind in how to care for people with dementia, the traditional care home and nursing home still look after its’ residents with dementia in the upstairs wings with rare access to the outside or daily experiences we enjoy.    

Only last night I met some friends in a pub enjoying a meal for a birthday chatting about visiting their mother in a care home.  They talked about, how a performer sang for the residents… some of the people with dementia joined them from the upstairs unit, mute in conversation and at the end of the song, they were able to say how wonderful the songs were, yet only to return to the wing upstairs wandering the corridors and remaining mute. 

These are popular misconceptions.   Just because a person has dementia does not mean they can’t see, hear, or join in conversations about what is going on.    The way people with dementia react to this confusion is different, some disengage, some cannot talk, some get frustrated, some get sad and in life, we all react in our own ways.  

What works better is everyday living, eating and drinking at the table, eating a meal in the restaurant with friends and family.  What the person with dementia sees within this is a sense of reality and is able to join in as it has familiar experiences.  The restaurant at Ixworth Court Specialist Dementia Care Village is open to everyone the same as any restaurant in the street with a chef cooking the meals and waiting staff serving the food.  ‘Fish and Chip Friday’ is a British tradition and is a popular event, we had a busy day catering for 20 customers joining together to eat in a restaurant enjoyed by the residents, their families, friends and locals.   The laughter is wonderful to see and hear as the people who live here still experience going out for dinner with their friends and families and the happiness this brings.

How Ixworth Court manages behavioural and Psychological symptoms of Dementia and how we minimise the use of non-pharmacological interventions for dementia behaviours. Stopping for tea

To support an increase in a persons sense of wellbeing and to manage behavioural and psychological symptoms of dementia, research have found that providing everyday activities can improve the quality of life for residents with dementia. At Ixworth Court, the care is provided by meeting a persons’ individual needs in an environment which is the ‘expected environment and providing a person with socially relevant activities such as offering a cup of tea in the moment that they should expect this need to be met.  Taking a cup of tea to a person sitting in their bedroom does not meet the needs of a person with dementia as this is simply not expected.  

We set the table for breakfast and lunch we sit at the table, we offer tea in an environment which looks like a kitchen and feels like a persons kitchen in their home.   These social relevant activities are offered to the residents as daily therapy and are an alternatives to using antipsychotic medications in care homes which are used to settle the confusion, there is no confusion here. The staff support the residents feel safe as they show how the kitchen is managed and provide socially relevant activity such as offering a cup of tea in an area which feels like an expected environment, our kitchen table.

Meaningful Living for Dementia Care

Caring for people with dementia in real life environments supports a person with dementia feel normal.  Here the residents are preparing dinner at the kitchen table.

In typical care homes it is difficult to engage in activity-based support such as going to the activities room or taking a cup of tea to a person sitting in their bed, this doesn’t meet the needs of a person with dementia as this is not happening in an expected environment or part of the real living experience they would have.

It also excludes residents with high levels of need as they experience barriers to inclusion in the activities, they simply would not be able to sit at a table in an activities room.  Could you if you feel anxious walk into a room full of strange people, do something which appears to be out of character.

In the Homely Lounge there is no gap between rhetoric and practice as experiencing social relevant activities is part of living in homely house- we set the table for breakfast and lunch we sit at the table, we offer tea in an environment which looks like a kitchen and feels like a persons kitchen in their home.   These social relevant activities are offered to our residents as daily therapy and are an alternatives to using antipsychotic medications in care homes.

The staff are trained to support the person living with dementia to remember how the kitchen is managed and support them in doing socially relevant activity such as preparing dinner, offering a cup of tea in an area which feels like an expected environment.   Being part of a group also provides prompts into what we are doing and why. 

Small group living for people with dementia is far more beneficial to stress free dementia care.  Homely House at Ixworth Court Specialist Dementia Care Home in Suffolk, UK